According to a story from Palomar Health, a patient with Hunter syndrome is about to finish up the company’s Pathmaker Internship program. The patient in question is Kyle Underwood, who recently earned a scholarship to the USC Sol Price School of Public Policy valued at $100,000. Hunter syndrome is a serious disorder, but Kyle was born with a milder form that has left his mental function unimpeded.
About Hunter Syndrome
Hunter syndrome, which is also known as mucopolysaccharidosis II (MPS II), is a rare lysosomal storage disease. This X-linked disorder is caused by mutations of the IPS gene and affects males almost exclusively. This mutation causes a deficiency of a certain enzyme which allows other substances to accumulate in the body and cause symptoms. These symptoms include ear infections, abdominal hernia, enlarged tongue, distinct facial features, developmental declines, joint stiffness, enlarged spleen and liver, heart problems, skin lesions, behavioral abnormalities, retinal degeneration, and hearing loss. Treatment for Hunter syndrome includes enzyme replacement therapy and bone marrow or stem cell transplantation; these treatments cannot address neurological symptoms. Research into gene therapy for this disease is also ongoing. There are around 2,000 people worldwide that are known to have the disorder. To learn more about Hunter syndrome, click here.
Kyle’s Story
Even though Kyle has a milder variant of the disease, he still has to take enzyme replacement therapy on a weekly basis. Hunter syndrome also affected his development and he has endured multiple surgical operations. Regardless, Kyle says that the diagnosis has given him both a unique perspective and unique opportunities to impact others. It was his experiences in the health system as a patient that first got him interested in potentially pursuing a career in healthcare.
However, Kyle is also interested in business and doesn’t see himself becoming a doctor. Instead, Kyle is using his internship opportunity to get involved in more administrative roles, such as human resources, business development, and marketing.
Kyle has witnessed first hand as a patient some of the problems with the US health system, such as inefficiency, lack of patient-centricity, and extreme costs. In about a month, Kyle will be graduating from the University of California San Diego, with a BS in Public Health and a minor in Business.
